Abstract

The aim of this thesis was to identify both patient and carer factors relating to caregiver strain in spouses of stroke patients. The secondary aim was also to assess the effectiveness of an intervention in reducing levels of strain, involving the provision of cognitive assessment information to both patients and spouses.

Previous research has not investigated specific cognitive impairment after stroke in relation to strain and reports of the relationship between patient disability and strain are not consistent. Assessment of physical function and detailed neuropsychological examination was carried out with stroke patients in Nottingham, Derby and Mansfield as part of a prospective, multicentre, single-blind randomised controlled trial. The assessment battery included measures of general mental state, language, perception, memory, executive function and praxis. Individualised information about cognitive function was provided in verbal and written form to each patient and carer. Carer strain was assessed in 57 spouses three and six months later. Around a third of spouses experienced significant strain. Results confirmed the importance of patient physical function with disability becoming an important factor with time. Basic self-care skills (Barthel Index) measured at three and six months, were significantly associated with carer strain at six months. Impairment of the patient's general mental state on the Mini-Mental State Examination (MMSE) and communication difficulties on the Sheffield Screening Test for Aphasia (SST) were related to carer strain and were also associated with emotional rather than physical strains. Carer strain was not significantly associated with other cognitive deficits, including impairments of perception, memory, executive function and praxis.

Previous research has not assessed specific carer characteristics in relation to strain. In order to identify these, 222 spouses of stroke patients were sent questionnaire measures of strain, stress, mood, handicap, adjustment, social support, life satisfaction and personality and their perceptions of the patient's mood and independence in activities of daily living. Univariate analysis suggested that strain was associated with increased carer handicap, high stress, poor mood, 'chance' health locus of control, expression of depressed mood, low optimism, low positive affectivity, high negative affectivity and low self-esteem. Strain was also related to poor adjustment, low satisfaction with life, less emotional and practical support and a greater discrepancy between actual and ideal levels of support and increased help from professional services. Strained carers also perceived poor mood and increased disability in the stroke patient. Multivariate analysis indicated that the most important factors were low carer mood on the General Health Questionnaire-12 (GHQ-12), poor perceived patient independence in activities of daily living on the Extended Activities of Daily Living Scale (EADL) and high negative affectivity on the Positive and Negative Affect Schedule (PANAS).

The relationship between these factors and strain needed to be tested prospectively. In a multicentre study of 116 spouses in Nottingham and Leicester, carers were sent the CSI, GHQ-12, EADL and PANAS at three and six months after the stroke. Again, over a third of carers experienced significant strain. Results confirmed those of the previous study and mood, perceived disability and negative affectivity at three months were found to predict high levels of carer strain six months after stroke. The most important caregiver factors were therefore the spouse's appraisal of their partner's disability, together with two emotional components of subjective well-being, one transient and one stable. The results also highlighted the role of other factors, including incontinence, disturbed sleep, communication difficulties and the amount of time spent caregiving in carer strain.

Early identification of carers who may be at risk of strain later on will enable services to be targeted at prevention rather than cure. There was a non-significant trend towards reduced strain in carers who had received information about cognitive deficits after stroke. Spouses may benefit from individualised information about their partner's stroke. Strain is emotionally laden and services might focus on teaching effective coping strategies to reduce depression and provide emotional support. More research is needed to identify services that are effective in alleviating or indeed preventing strain.

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